All Things Disability

Inclusion Around the World: Sue Swenson

Episode Summary

Sue Swenson, president of Inclusion International, shares insights from a career spent fighting for inclusion in the United States and around the world, as well as what inclusion means to her.

Episode Notes

Sue is President of Inclusion International, a global organization that advocates for the inclusion of people with intellectual disabilities into their communities as valued neighbors and citizens. Prior to that, Sue served as the director of the National Institute for Disability and Rehabilitation Research and twice served as the acting secretary of the Office of Special Education and Rehabilitative Services. Sue also spent four years leading the Arc of the United States as its CEO.

Sue's work is very personal. Her son Charlie was born with multiple disabilities. He was a strong, self advocate, and advocate for others. He died nearly 10 years ago, in 2013. You'll learn more about Charlie and how he inspired Sue's work.

About Northeast Arc

Northeast Arc was founded in 1954 by parents of children with developmental disabilities who wanted to raise their sons and daughters as full members of the community. By having the courage to challenge professionals who told them their children could not be educated and would not live to become adults, these parents created the systems that enabled them to attend public schools, develop friendships, reside in the neighborhoods of their choice and to earn a paycheck. Over the years, our programs have expanded to support children and adults with a broader range of disabilities, including autism and physical disabilities. Today we serve thousands of people in nearly 190 cities and towns across Massachusetts. The goal of the Northeast Arc is to ensure that children and adults with disabilities are able to live, work, engage in civic life and play in the community. We work toward that goal by offering a wide variety of programs including Autism Services, Day Habilitation, Deaf Services, Early Intervention, Employment Services, Family Support, Personal Care Assistance, Recreation, Residential and Transition Services. Northeast Arc is overseen by a volunteer Board of Directors composed of individuals with disabilities, parents and siblings of people with disabilities, and business and community leaders. Programs are operated by a professional staff led by a Chief Executive Officer with 35 years of experience at the helm of the organization, and are supported by a large volunteer corps.

Learn more at ne-arc.org.

Like us on Facebook: https://www.facebook.com/NortheastArc

Episode Transcription

[MUSIC PLAYING] Hello, and welcome to All Things Disability-- a podcast from Northeast Arc. I'm Jo Ann Simons, the President and CEO of Northeast Arc. And today, I'm thrilled to be joined by Sue Swenson.

One thing we've learned in our work around the world is the best way to ensure the inclusion of children with disabilities in schools is to ensure that all children are included in schools. As soon as you start to let ethnic minorities or girls or other people be excluded, then children with disabilities aren't going to have a firm footing either. So we've changed our strategy on that to not just say, oh, here are the special rights of children with disabilities. But we want to make sure that the kids with disabilities are not always the last group in the door.

[MUSIC PLAYING]

I've spoken, in previous episodes about my son Jonathan, and like me, Sue's work is very personal. Her son Charlie was born with multiple disabilities. He was a strong, self advocate, and advocate for others. He died nearly 10 years ago, in 2013. You'll learn more about Charlie in a few moments. But first, I want to welcome Sue who is joining us via Zoom. Sue, thank you for joining us today.

Oh, Jo Ann. Anything for you, and anything for the Northeast Arc. You guys do such great work. And so values-driven and it's so important to maintain that.

Thank you.

I'm very happy to be with you.

Thanks so much. Like me, the work is very personal for you. Can you start by telling our listeners about your son Charlie and how he inspired your work?

The trick Jo Ann will be to get me to stop talking about Charlie. But yes. I will. Charlie was born in August of 1982, not diagnosed for 18 months. But when he was diagnosed, his disabilities were severe and profound level. We don't use that language much anymore, but he had very complex and difficult support needs.

Charlie wasn't-- he never took a step, he never spoke a word. He was legally blind. I know this sounds a little bit odd. But the fact that he was a 1 in 5 million diagnosis helps me with his inclusion. Because whenever they said, oh, we have a program for children like Charlie, I said, no, you don't. Most of them had never seen anybody like Charlie before in schools, doctors. He was a one-off guy.

Muscular dystrophy was his key diagnosis, but it came with neurological impairments as well. Anyway, he was our middle son. Everything that we did for him was indexed to his older brother, Will. So it was, well, what his Will doing, that's what we want Charlie to be doing. And even in playgroups, I noticed that Charlie was paying attention to the other children in the neighborhood who were over at our house or when we went to somebody else's house.

So the idea of being included in school was really cute for me. In Minneapolis, his first school was a segregated. Classroom for children with quote, "profound disabilities." On the other side of Minneapolis from us and inside of a school that was all children with disabilities. This would have been 1988, I think. Or '85. I'm sorry. I don't remember the year.

Anyway, he was a little guy. And one of the things Charlie always had going for him was this beautiful smile that he had. This little puff of blond hair and a beautiful smile. When he came back from school, after the first couple of weeks, he started smiling with this really strange, carcass head to one side and screw up his mouth, and he made a funny-looking smile, and I thought, God, something's going on. I better go to school and see what the problem is.

And when I got to the school, he was-- after lunch in a prone stander next to another little guy who had really significant cerebral palsy. And they were standing there looking out the window in their prone standers after lunch. And that little guy smiled in the same way that Charlie had started to smile.

And so the light bulb went on and I just went to the teacher and said, look, if he's learning stuff from the other kids around him, I want him in a classroom where he's going to be learning about talking and behaving and all of the other-- getting around mobility and everything else that needs to go on in a person's life.

And she said, oh, you're going to get me in so much trouble and she handed me an application to partners in policy making. And I finally started that program in '89, which was the year of the drafting of the ADA. So I made my first trip to Washington during that year, and Dave Durenberger, who was one of the original co-sponsors of the bill was a very progressive Republican senator from Minnesota. And our assignment was to bring on the other senator from Minnesota who was also a Republican but not so progressive. We got him on.

So we felt really good about that. It was a kind of a landmark in the ADA effort. And it was a mixed group of parents and people with disabilities who spoke to him at his office in Minneapolis and got him signed on to the bill. So Charlie was included in school, starting in second grade. I worked really hard. He went from the segregated school on the other side of town to a little school on our side of town that was head start and a disability classroom.

And then he finally got into a classroom at the same school where his brother went. And that school was three blocks from our house. And the experience there really guided my approach to advocacy and even now at an international level, Will's second grade teacher-- Charlie would have been in second grade if he was in a regular order school at the time. And the teacher that Will had had for second grade was right down the hall from this little segregated classroom.

So I walked down to her and just said, hey, Joan, can Charlie come for story time after lunch? Because I know you guys do story timing. I know he would appreciate it. He loves being read to and she said, yeah, sure. We'll come and get him and we'll take him back. We've no problem. And after two weeks, she called me at my desk, at my job and said, Sue, it's Joan, I really need a favor. And you know this. You're a parent you're an advocate. I immediately went to the worst case scenario.

We always do.

Right? And I started thinking, God, damn, do you mean you couldn't even handle him for story time after lunch? And she said, no, I need a favor. The other kids don't want him to go back to that little room. They think it's sad. So they want him to stay with us all afternoon, would that be OK with you?

The door opens. I have chose.

A door opened and basically I said, Joan, is a special favor to you, we can still afternoon. And then two weeks later, she called me and said, you know what? The kids say that they think he would love science. And we do science in the morning. So they want him to be with us all day, would that be OK?

So this was entirely driven by the children and their desire to include Charlie in what was going on in their classroom. And the teacher was smart enough and she was a veteran teacher, skilled enough to respond to what they said and to build an inclusive classroom. No IEP, no giant plan, no giant-- where are we going to get the resources to do this? He already had a one-to-one to help him with toileting.

But then our first task was, how do we get that aid assigned to the classroom instead of to Charlie? Because I didn't want one adult just hanging over Charlie's head all day long. Anyway, his experience with inclusion in that school was profound. And it was real, and it was organic. And over the years, I've tried to bring this point of view to my advocacy in the federal government that getting a lawyer is not always the solution.

Sometimes, it's the organic understanding of human rights. And he is part of our family. And his brothers need to see him included in school too. It's really important to all of us that he be included. It's not just what are his outcomes, it's, can we normalize the inclusion of people with disabilities for the whole neighborhood?

It's such a profound story. I hope that our listeners who are still struggling with inclusion.

Well, it was a different time. So again, I said I did this without IEP. I mean, afterwards, we had an IEP meeting where we wrote a few things down. But it didn't drive the inclusion. I don't know if families can do that now. I think they're immediately put into a legalistic box of, oh, well, if you don't agree with this, then you can file a due process and we'll get our lawyers. And schools have enormous quantities of lawyers.

They want us to file due process because then we're in their clutches. And I don't know if it works anymore. But I hope we can get back to a place where a child with a disability is just naturally included from grade to grade. And the fact that he was included in second grade made it easy in third grade. I just said, well, I figured it out in second grade, certainly, you guys are as smart as those people. So you can make it work. And that worked even when we moved to Maryland, when I started to work in government.

I just shamed them. I just said, look, you guys have this big fancy school and all this money, and this little high school in Minneapolis was doing a really good job with inclusion. And here's how it worked. And surely, you can figure out how to do that.

It's remarkable. I have heard you say many times that Charlie was a teacher, but that is an extraordinary example of how a second grader-- as a second grader, he was the teacher.

He brought inclusion with him everywhere he went.

And I think it's so important to hear the story from parent who had an experience with a child that's complex-- that didn't speak, that didn't walk, because so often, they're put in a different box, and we say, oh, we're going to do it with this high-functioning person with Down Syndrome This high-functioning folk with autism. And that the inclusion really has to be inclusive.

And part of that is the overwhelming focus now on test scores and math skills and reading skills and-- I know enough to know that that's not actually the purpose of education. The purpose of education is to help each person develop their personality to the full extent that's possible. So my goal was to help Charlie learn to be himself with other people.

And so he started out with behavior challenges and all kinds of other stuff. But he learned how to be with other people and be sociable in that regard. And that's really important.

Yeah.

And that set the stage for him not being shut out for the rest of his life. So--

He certainly--

Yeah. I get it. I know what families now are up against. I really do understand it. And the other thing is, I was on the board of the Arc in Hennepin County in Minneapolis when I came out of partners, and we had more opportunities in those days, I think, to participate in nonprofit organizations, to advocate, together as a group.

I was able to go to the state legislature and advocate with the Arc. It was a-- I don't know. Sometimes, I think parents nowadays don't have time to do that. They are so busy with everything else that one falls away and yet it's so important.

Oh. I agree. I just said the other day that families have not been at the policy table like we were in the '80s.

Oh, Jo Ann, I think that's right. And I think it's really sad.

Were losing an opportunity because-- and I'm not sure exactly how to fix it. But let's talk a little bit about your work at Inclusion International because that's the latest chapter in a very long career, which, of course, is not nearly over.

Well, I'm retired actually so-- this is a volunteer gig. So--

Tell us a little bit about Inclusion International and your work with the organization.

So Inclusion International has very deep roots in the United States, and actually with the Arc.

And in Massachusetts because we claim him

Absolutely. [Gunner Du Bois was a founder when it was called the International Association for the Scientific Study of-- I don't know what it was. It was a bunch of large service providing organizations that got together and said around the world we need to work on what countries are doing to support people with intellectual disabilities and their families. And they realized that they had power. And they began to develop ways to bring that power into the international forum. So at the UN, or at the World Bank, or other places where they could bring their voice. And then they opened their arms and realized that welcoming the voices of families and of self-advocates was going to be a more powerful way to do that.

For many years we had a rule that our national member couldn't be a service provider. So we went from this service providing history into an approach that said, oh, no, you have to be just a family organization. And a lot of our national power fell off. So a couple of years ago, it was actually not driven by me, but at the same time as I took over for president we changed our rules to allow service provider organizations can join us as affiliates. And several very powerful organizations in the United States have joined. And also, if the board of an organization, like the Arc of the United States, is at least 50% families and people with disabilities, they are a voting member.

So we have two voting members in the United States, the Ark of the US and Self Advocates Becoming Empowered. And they share the vote. And then in other countries, I don't think we have any other countries where a self advocacy organization shares the vote. But in other countries we have the Canadian Association for Community Living, which is very much like the Arc across Canada, just changed its name to Inclusion Canada. And we have an association in Germany and England and France and Scotland, and they're all over the world in the developed world. Australia and New Zealand. And then we have emerging organizations in other parts of the world. We have about 140 members in 118 countries. And again, it's people with disabilities and families that we advocate for, so it gives us a broad portfolio.

Among the eight key organizations that advocate at the UN for disabled people, we're the only one that includes families. So that's a recognition of what life is like for people with intellectual disabilities and how the family's approach and support is crucial and lifelong. You don't get independence and move out of the house and then it's over. That doesn't happen.

That's right. I would be--

Although Charlie moved out of the house and he was fairly independent, but we were still very involved in his life obviously until the end.

I'd be interested to know if you see differences in how we view inclusion in the United States versus other parts of the world, and are we doing a better job or just an adequate job here?

Jo Ann, that's a really honest and good question. There are parts of the world where there is no right to attend school if you have a disability. And inclusion there can mean-- and we oppose this, our values statement opposes this, but we have a statement of unity that all of our members have to sign before they join us. But in some places living in an orphanage is the only way to get access to school for a disabled child. That's a big thing to change in a country, and a lot of the large charities in the world support those orphanages, so that's a little bit of a problem. In some parts of the world, there is no way to get an education no matter what if you're disabled. And you'd be surprised, even in some advanced countries, there is no universal right to education, so kids like Charlie are excluded.

They may include children with Down Syndrome, and typically in a special school for kids with Down Syndrome. But a child with significant disabilities or complex support needs, if you're not toilet-trained, forget it. You're not going to school. So there's just a wide variety. I think, this is frustrating, but in the US I think our expectations are better than anybody else. I think we have a clearer picture of what we want, but it is still out of reach.

We want every family with a child with disability to walk in the door of a school and be able to attend and be supported in their learning, the same way as all of the other children are included, and we don't want it to be a heavy lift or a difficult situation. That's not happening to almost anybody I know. There are people that are fighting their way into inclusion and moving to a different town, or you know. It's painful what people are going through, and yet our expectations remain high. That's really important.

I have seen a shift of parental expectations being very high as you say, and oftentimes higher than the school district. I spoke to a young parent recently who wanted her five-year-old child with Down syndrome-- surprise, surprise-- to go to kindergarten and not be in a segregated setting, and said, look, can't we start with-- let's start with kindergarten. Why are we assuming exclusion--

That's what the law says you're supposed to do. Right.

And so I see in parents at least a willingness not to accept what is first offered to them. On the other hand, to your point, I still see families whose children are turning 22 who have no idea about adult services, as if they have not spent the last 22 years with their child.

And the Workforce Innovation and Opportunities Act was supposed to put in place transition supports that would help kids in 18 to 21 programs get access to information. And I personally think one thing that I would love to see would be self advocacy training by self advocates in high schools, paid for on a contract, not just some grant and not a volunteer thing, paid for in a contract under the WIOA, which I think is possible. To teach young people and their families, hey, here are some things you could be doing. You could have a girlfriend. You could live in a house away from your mom and dad. You could have a job. You could buy what you want with your money because you have an ABLE account.

I mean, these are things that-- I think there are many self advocates and families who could teach that to other people, but the schools aren't opening their doors to that. And I don't think they realize what a great advantage that would be to have a strong connection to what transition really is about. It's not just about VR, it's not just about that.

Well, I think that as you say that, I see the importance of teaching self advocacy to students across educational--

Starting in kindergarten.

Yeah. I see the importance of teaching self advocacy as you say starting in kindergarten. Children would be much safer, protected from predators, from community members. So we don't need that. But we talk about inclusion. I'm going to deviate a little bit. The last couple of years we've seen this country embroiled in very significant conversations about race, diversity, and inclusion. And you said that Canada just changed their name to Inclusion Canada. And a very bright light bulb went off for me because I've been disappointed that the conversation about race, diversity, and inclusion has forgotten people with disabilities. And we invented the word inclusion. It's our word. And we've let another movement take it away from us. So congratulations for Canada for seizing it back.

I think it's important. I think one thing we've learned in our work around the world is the best way to ensure the inclusion of children with disabilities in schools is to ensure that all children are included in schools. As soon as you start to let ethnic minorities, or girls, or other people be excluded, then children with disabilities aren't going to have a firm footing either. So we've kind of changed our strategy on that to not just say, oh, here are the special rights of children with disabilities. But we want to make sure that the kids with disabilities are not always the last group in the door. That's kind of hard to set up.

We're going to the Arc Convention. We're hoping to talk to people. Because one other thing that we've learned from Canada is their provincial chapters are joining now as affiliate members of the Arc, and our new-- or INCLUSION International. And our new rules allow that if there's an umbrella organization, then the affiliates, their members were never allowed to be our affiliates. Now they are. And that, there's so much power there between people who have local knowledge. And you guys are working on the same problems in various countries. And so I'm hoping that we can encourage some other state chapters or other chapters of the Arc to join us and to affiliate because you would be shocked at how similar the problems are from place to place.

I had a profound experience in Mexico a few years. We were visiting a tourist site and the timeshare sales people were just everywhere. And I kept shooing them off and saying no, no, no. And one woman came up to me and pointed to my son, Jonathan, who has Down Syndrome. And she said to me, even though she was a timeshare salesperson, no, I have a daughter with the same face.

Oh.

And we started talking and she told me what she worried about was when she was no longer around to help. And I thought--

Bingo.

She wasn't a timeshare salesperson.

No, she was a mom just like we are.

And it changed, it changed me. And realized, that it didn't matter who you were, the problems everywhere were the same. What's going to happen when I'm no longer there?

And we have a powerful member in Mexico, CONFE, has a strong network throughout Mexico. And see, if you were part of our network, you could have given her a connection.

Well, we'll try to fix that.

Local personal ambassadors, we all are.

Well, it was before Google. I would have been able to help her more.

Yeah, yeah. I hear you.

But I think that it's so important for those of us who are in the movement to hear about movements elsewhere because innovation is happening everywhere. And how do we share that? We're not competing anymore. I mean, there's enough business as providers for all of us. We just, we need to get along, share expertise, try new techniques. I mean--

Then if we get direct support workers from other countries, shouldn't we want those people to have grown up in an inclusive school where they would have an understanding of disability sort of built into their DNA before they immigrate here. I mean, it's just we want to build a global understanding of what this means.

And I'm glad you say the word movement. I think that's so important. I think that's what I wish modern parents would understand is there's no one organization that's going to come and take care of everything, or tell you what to do, or-- it's not top down. A movement doesn't have a leader. It has leaders all over the place. And each listener to this podcast is a leader, and they lead in how they demonstrate their life, and what they do, and what approaches they take. And that's what makes it a movement and that's where the power comes from.

And Arc is a great example of that. I mean, chapters of the Arc were just springing up after World War II all across the United States. And they weren't even chapters of the Arc yet, they were just little organizations that families put together to try to make life better for people with intellectual disabilities. They weren't connected to each other, it was the time for that to happen. Well, what is the time now? What could we be learning from each other and sharing with each other?

I think there's a lot to share and you have a unique perspective having worked under three presidents.

Yeah, four now actually.

Four, OK.

Well, I worked under Bush for six months.

OK, we'll count.

Yep.

Bush, Biden, Obama--

It wasn't an appointment, but he let me stay. And I was the only disability appointee who stayed, which I was proud of.

You should be proud because I never [AUDIO OUT] New York political affiliation. I knew you as a fierce advocate who worked under several administrations.

Thank you.

How have you seen policy, disability policy evolve under those administrations?

That's a great question, too, Jo Ann. You're good at this. So in Clinton, all of our hopes were on ADA, and all that's going to change the world. And many of us looked at it and said, yeah, it's not real specific about people with intellectual and developmental disabilities. And I was, in Clinton, in charge of the Developmental Disabilities Act, which I thought was a precursor to the ADA. I mean, it is the Developmental Disabilities Services and Bill of Rights Act, and it was the first statement really of the human rights of people with developmental disabilities in the world.

And we still around the world have that problem of when the disability community starts talking. We're sort of the stepchild. We're trying to say, yeah, don't forget us, don't keep excluding us, and don't let your inter-disability able-ism exclude us. So you've heard people with physical disabilities say, well, yes, but my mind is OK. Well, I call that able-ism. And that's something we're still working with.

Clinton also had though the Government Performance and Results Act, which I think has had an enormous impact on federal services. And the idea of performance measures or services really changed what Medicaid was and how it worked, and empowered us to begin to think about individual outcome measures for wayward services.

And under Obama, that was expanded in critical ways. I was in education in Obama. And again, for me having come out of Minneapolis, the awareness of how Special Education law is implemented differently in cities with predominantly Black populations, or in school districts with predominantly Black populations, there's a disproportionate delivery of rights to people in the United States. And that was painful.

In Biden all I worked on was-- it's this thing called the Disability Innovation Fund, and the funding was just announced yesterday. It was $177 million that was unused VR funds. And I just came in as a special-- as a senior advisor, I think, they called me. But I worked on trying to organize projects that would help people escape from sheltered workshops. And it just went out to-- I think there were 17 states or something that got the funding as of yesterday. And they're big projects. They're between $9 and $13 million, so it's a lot more money than they usually get for a specific five-year project. So that was interesting.

I'm really proud of all three administrations. Very good at, and in fact, Bush was too, really good at finding disability advocates to lead disability programs. So we have Katie Neas now in my old job. I was the Deputy Assistant Secretary in Obama for the whole Obama administration, and she is now Biden's Deputy Assistant Secretary. She's been acting since she started last winter, in the winter at the beginning of the Biden administration because the Senate isn't acting on the appointment. So that's the biggest shift that I saw.

I mean, under Clinton we still worked with Congress hand in hand. In Obama, we were able to kind of make some things happen. In Biden, at least under-- well, I mean, Obama, as soon as we had Mitch McConnell taking over the Senate, it was just a shutdown.

And usually disability is such a bipartisan issue.

We're bipartisan, absolutely. And I think in states it still is. I think, I hope state legislatures are still stepping forward. But I think IDEA, I-D-E-A, is really seriously out of date. And I don't think it's going to be modernized as long as we're afraid of the other guys. We're afraid that they're going to take away fundamental rights. We're not going to open up the law. So that's been a big shift, but a big shift not just for us, but for all of government.

Well, we had a big win here in Massachusetts recently. Our Governor Charlie Baker signed a first-in-the-nation law which gives access to state colleges for high school students transition, students up to the age of 22.

Wow, that's great.

We're very excited about it, but it took a decade to get to his desk. It took a decade to get to the governor's desk.

Yeah, and Charlie-- I will say Charlie got the last 2 and 1/2 years of his IEP were delivered at the University of Maryland, but he was not a registered student. He worked in the opera workshop because he loved opera, and he went swimming, and he did other things. He worked in the Special Ed Department just so that they would begin to understand who people with disabilities are. Again, he was a teacher there. All he did was deliver coffee, but it was a chance for some of the PhD students to interact with a person with complex support needs. They've never thought about that before.

So the thing with college, it's socially really important. And congratulations to you and first-in-the-state, first-in-the-nation. The TPSA people must be thrilled.

Well, we had a unique last eight years here in Massachusetts. Our governor who had previously been the Secretary of A&F, administration and finance for the state, but prior to that he had been the Secretary of Human Services. So we had someone who intimately knew our business--

Understood. Yeah.

And there wasn't any-- and his experiences. But as you say, it's really that. It's those moments where Charlie, your Charlie, has been a teacher that is not something we can quantify and document or measure, except in the experiences. And this week we had a golf tournament as many organizations do to raise money. And Jonathan, my son, is a pretty good golfer. So his job there was to tee off on the 17th hole. And everybody could choose to either take his long drive or their own long drive. And--

Whoa.

And so it was a great way to demonstrate his abilities. But what happened at night was he was sitting with a bunch of young men. And I went up to him and said, don't you want to sit with your sister? She had also golfed. And he said, they invited me to sit with them, and I'm still surprised and not expecting the kindness of strangers. And that moment where four people who had seen his tee shot, met him that day, similar age, asked him to have dinner with him.

That's choking me up a little bit.

It's not measurable, but it's like. And, of course, what I don't want to do is write them a letter and say thank you, because--

No. Oh God, no. Because that turns it into some kind of official act, right.

It ruins it. So Charlie delivering coffee. And I think their presence is there for so many reasons. Jonathan had a classmate in high school who now is the parent of a daughter with Down Syndrome. And you wonder whether or not the presence in high school of a student who looked like Jonathan made it easier for that parent, for a prenatal diagnosis.

Of course it does.

And to see him treated fairly and included.

So Charlie I know has gone on to educate a generation of other people who had the opportunity--

He was fortunate. He had great support staff over the years. One man, Nate, was with him for 13 years. And Nate always described Charlie as his coworker. He said, when we're together, we can make any place inclusive. So they used to go to the Kennedy Center, make it inclusive. They used to hang out in the neighborhoods, make it inclusive. And I think that's the power that people with disabilities and their families have. If we only can see it and allow it and realize that it is, it's an organic power that we have. We don't have to sue anybody for it.

That's a great way to maybe close out this podcast. And I want to ask you to finish up by reflecting on some of the positive changes you've seen in your career and in Charlie's life and after.

Oh, wow. There are so many. I mean, I think there are, as I said, expectations are higher than they ever were. Institutions are continuing to go out of business. They started to go out of business as soon as we had the right to school. That's what my argument is internationally all the time is when you have the universal right to education, you will not see children growing up in institutions anymore because their families will see that disability is normalized in their community.

That change, I mean, you have to look at the state of the states in developmental disabilities to really get your head around how that change is still happening and how we're still pushing. But again, that's a change that is so powerful it cannot be overstated, that we need to make sure that we cement the idea in people's minds. No, we're not going back to segregated schools, to orphanages, to institutional placements for people with disabilities.

And I think some of the other positive changes are just seeing how, as you said, the bigger community has picked up the word inclusion and they're applying it in all kinds of ways. Where we weren't necessarily bringing it forward, but we will be woven into that also. I mean, people of color also include people with disabilities, women also include women with disabilities. And there are big organizations, global organizations, Microsoft, Amazon others, they all have inclusion efforts in their organizations to think about disability and what does it mean.

So I think that's almost unpredictable. In 1990 I don't think I would have looked out and said, oh, of course, all of the big organizations are going to have disability officers.

I look back and think about what has changed, and it's remarkable. And like you, I don't think I would have predicted the positive changes in 1979 when Jonathan was born and what my initial dreams were.

And we can hope that from here, the younger generation will take the culture in ways that we can't even perceive at this point.

That's right.

I'm very hopeful about that. I don't know what it will be, but it will be something you and I will love, but we haven't thought of it yet.

Well, I want to thank you again, Sue Swenson, for being here today. And I look forward to seeing you in Denver. We want to thank Peabody TV for providing our wonderful recording space. And all things disability is made possible through the financial support of the Changing Lives Fund, which was created through a gift from Steve Rosenthal. To learn more about Northeast Arc and to find past episodes of this podcast, please visit ne-arc.org. Thank you.

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